Monday, December 30, 2013

My World Sure Weighs A Lot

I think I'm at a point again where I just need to let it out.  Maybe by letting it out, I can try to let some of it go.  I did feel better the last time I spilled my guts on the blog back when I had a "confession."  There have a been a lot of days lately where I feel like the Universe is conspiring against me and my family but then something will slap me in the face and remind me that it can always be worse.  Something else that slaps me in the face daily?  The biggest bright spot I could possibly imagine.
So when then weight of the world seems to be crushing me, this little face is such a wonderful respite.  I don't think it is possible for a baby to be any cuter.  Yes, every parent says that.  :)

I have struggled tremendously since Megatron was born.  There hasn't been a shortage of drama in his 5 short months.  Death, divorce, illness and career stress have all reared their ugly head since his birth.  Through it all though, this kid just keeps growing and hitting milestones.  And I can't even begin to describe how thankful I am that he is so small and doesn't yet realize just how much we've been through since he was born.  That makes it all a little easier but there hasn't been a single day go by since he was born that I haven't cried. Sometimes I just let a few tears spill when I'm alone on my commute to work (pretty much the only time I'm alone these days).  Sometimes the crushing weight of the stress sends me to full-on sobs.

I try so so hard to not cry in front of this precious face because to him, there is no cruelty or sadness in this world.  His only anger comes from an empty belly or a full diaper.  And I want to keep it that way for as long as I possibly can.  He's going to have one hell of a rough road so I will do my best to protect him for as long as I can.

It's hard to put on a happy face around him though when the stress of the real world just won't let up.  There are big changes coming our way this week....

After a 12-week maternity leave, I was actually looking forward to returning to work.  I love what I do and after such a chaotic maternity leave between Megatron's diagnosis and surgery, I was ready to try to get back into something of a routine.  My job has always required travel but we were going to try to make it work.  Then my job situation changed and was going to require more travel.  If The Pilot was home every night, we would have still made it work.  But he isn't home every night.  There are 2, 3 and sometime 4 days at a time where I am on my own with Megatron.  If I was going to be traveling too, we would have had to ship Megatron off with family.  Again, we probably could have made it work if Megatron was a normal, healthy baby.  But he's not.  He doesn't travel light when you consider his 6 medications and that he needs more daily bottles and diapers than the average kid, at least from what we know (he doesn't absorb food well so he eats A LOT and thus also has a lot of diapers).

So where does that leave the work situation?  After an agonizing couple of weeks of trying to work with my employer to come up with an alternative, The Pilot and I made the decision for me to quit my job.  In early 2010, when I first met The Pilot I never imagined being a mom, period.  So the thought of being a stay-at-home mom is terrifying.  Yet, the Universe confirmed it was the right decision less than 24 hours after I gave notice to my employer.

The day after my employer accepted my resignation, I received a call from Megatron's GI doctor regarding the results of a recent ultrasound and dopler of his abdomen.  His spleen continues to enlarge.  While his lab work continues to look better, the enlarged spleen is a sign that his gimpy liver is still struggling.  The GI doctor ordered more labs for this week and will check out his spleen again at the end of January but suggested we start learning more about our options for a liver transplant.  Her theory is that if we learn the options before Megatron's health starts to decline, we will already be more informed and prepared for the next steps.  She had an excellent point that it is hard to retain any information when you are distraught over a critically ill child.  I already have enough trouble understanding some of the things she tells me and often end up calling the pediatrician to have her repeat everything in layman's terms.

My last day of work will be tomorrow.  We switch insurance carriers January 1 (thank goodness The Pilot held our insurance!).  Besides caring for Megatron, it will become my full-time job to work with the insurance company to start the process of meeting transplant teams.  Unfortunately they don't do liver transplants in Columbus so we will be headed to either Pittsburgh or Cincinnati.  I'm not sure yet how it will work but I am assuming we will meet with the transplant team at one, if not both centers and go from there.  When I say it is a full time job is not an exaggeration.  I have spent HOURS on the phone with insurance carriers regarding Megatron's care.  I can only imagine the transplant process will be even more time consuming.

Part of me is feeling that there will be some relief when I'm no longer working.  I'll be able to devote more time to not only Megatron but to my marriage, my house, my family, myself (things that have all been neglected at some point over the last 5 months).  The other part of me is terrified because I do love my job and still have career goals and I'm scared that I won't be as fulfilled.  I know I will cherish the time I get to spend with Megatron but I fear I'll miss my detail and deadline-driven career.  In fact, I know I will, but my hope is that I will adapt and learn new ways to fulfill that side of me.  Plus, I don't see this as a permanent solution.  I think once we get this sweet baby back on track and we get some of the other chaos in our lives under control, I will be able to look at other career options (even if it is part-time work).

Besides, if Megatron does end up needing a liver transplant sooner, rather than later, I don't know how I would manage to keep working.  We will most likely be in either Pittsburgh or Cincinnati for weeks.  The Pilot will need to keep working obviously so I will be living in Megatron's hospital room during that time.  He will need my full attention and I don't know how I would be able to keep working, even remotely.  It's one of those things that while the decision was scary and painful to make, it is already proving to be the right decision for right now.

Career aspirations aside though, I absolutely know I will never ever regret spending time with Megatron.  From the day I unexpectedly welcomed Megatron into this world, I have learned to do my best to not take anything for granted.  Life especially.  I try every single day to slow down and enjoy that sweet baby.  I don't want to rush these baby days because we won't ever get them back.  I don't want to wish away the middle of the night feedings and never ending diapers because he won't be small forever.   And no matter what happens with Megatron and his liver, I don't want to ever look back and regret not spending more time with him.  By quitting my job to care for him, I will just have that much extra time to enjoy these days.

Friday, December 27, 2013

No excuses, not sorry and some pictures

The Disney 1/2 marathon is in two weeks.  Say what??  Yeah. Training.  Sigh.  I will say that only doing the long workouts and nothing in between is not advisable.  But that is as good as it has been this go around.  While it is slightly frustrating, I've accepted that that is where my life is right in this moment.  I can't change it so I'm going with it.  Luckily I signed up for this race with no expectations.  I knew a PR wasn't reasonable.  Hell, it might be a personal worst and I'll be ok with that.  I did sign up for this race knowing I needed a goal to keep me moving post-baby.  I knew I needed to force myself to make time for training, and thus make time for myself during the stress that has been my life.    I also signed up for this race with one of my oldest and bestest friends in the world.  This will be our first race together and I cannot wait for our 48-hour vacation in Orlando. :)

I did get in 8 miles last weekend.  The winds were gusting at 25 mph + when I woke up Sunday morning.  I tried to bail but luckily my friend Lisa suggested we try a different trail, one that is much more protected from the elements by lots of trees.  And I'm so glad she did!  Granted, I hate the park we went to because of the hills, but she was right, there was hardly any wind.  I even ditched my jacket on the second lap and ran in short sleeves.  In December!  In Ohio!  It was a Christmas miracle.

We randomly saw a herd...gaggle...flock...gang? of wild turkeys.  Weird.
We had a nice time walking, running, shuffling, catching up, venting, gossiping.  You know, things women do best.  And boy did I feel better once we were done with 8 miles.  Not just physically but emotionally as well.  It's been awhile since I've had any "girl time."  I know I haven't been the greatest friend lately to anyone really but I'm not even going to apologize for that.  I'm doing the best I can just to survive these days.  The priorities are always Megatron, myself, The Pilot and my immediate family.  Not always in that order either and sometimes still one or more will get neglected.  Anything outside of that is not just a challenge but is like climbing Mount Everest.  I'm not going to beat myself up over that.  I do my best and that's all I can do.  Training suffers but I file that under taking care of myself and I am very much aware that taking care of myself is incredibly important when it comes to "survival" so I'm still doing my best to make it happen, no matter how sporadic.

Speaking of survival...we made it through Christmas!  hehe  Megatron's first Christmas was fun.  He doesn't have a clue as to what is going on yet so there wasn't any pressure.  I wrapped one gift for him and stuck a few other "needs" under the tree.  Baby socks and formula?  Best gifts ever. 

Check out that cute Santa butt! (Note to Megatron: I don't EVER want to see your butt on the internet once you are past the age of say...two.  See my 21 lessons.)

Opening the one wrapped gift I gave him....instantly started trying to eat the wrapping paper.  Hopefully it was non-toxic...

Megatron's extended family was very kind and sent him gifts from across two states.  And the toys were much needed as he is just starting to grab and interact with things and we didn't have many toys for him yet.  What was not needed?  Zip ties and having my hands covered in cuts and scrapes from trying to get those d*&@ toys out of their packaging.  I'm sure it's just going to get worse as the toys get bigger.

Hey Megatron, care for a spot of tea?

OK, that is all of my rambling for today. I hope you all enjoyed the holidays!

Friday, December 13, 2013

5k plus 8

I participated in my first post-baby race on Saturday!  Ok, so I didn't really race it...I didn't even enter as a timed competitor (it was cheaper to enter and not get a timing chip) but it was technically a 5k race so I'm going with the title of first post-baby race.  It was the local Jingle Bell Run to benefit the Arthritis Foundation.  I did it last year and had a blast so this year The Pilot joined me.  We were going to bring Megatron in the jog stroller but a winter storm rolled in the day before and it was snowy and COLD!  Not exactly the best conditions for a 4.5 month old.  He stayed warm and snuggly at home with grandma while The Pilot and I froze our baguettes off (Christmas Vacation anyone??).  Best part?  We were on the largest friends and family team again and were the top fundraising team, Jon's Jinglers.  Even more fun?  Last year, Jon's wife was "just" a former TNT teammate.  This year?  She's one of Megatron's team of doctors.  I can't even tell you how many tears I have shed with that woman in the last 5 months! HUGS!

The roads were slushy and both the Pilot and I were getting over colds so we opted to walk rather than run and of it.  And really, it was more of a "fun run" than a race.  Almost everyone was out there to have fun and support a wonderful cause.  So that's what we did!  We jingled our way through 3.1 miles and had fun in the process.  Plus, I'm not going to lie, it was nice to get out and do something "normal" with my husband...and without Megatron. 

Last year I did the race as a "warm up" for my long workout and did a zillion miles after the race.  I didn't have time to do that this year so on Sunday morning I ventured out on my own.  This time, it was The Pilot and Megatron who stayed all warm and snuggly at home.  What is wrong with me?  It was another COLD morning.

Just me and the geese...I should have known I was a little crazy for attempting the trail....

I was dressed in a million layers but I still hit the trail.  And that statement was almost literal when I arrived to find that the trail was plowed but was covered in ice.  It was a miracle I didn't actually "hit the trail."  Determined, I forged ahead.  The trail was really sketchy so 1.5 miles in, I decided to try a local park that has a trail around the perimeter.  It was mostly clear so that was good.  The downside is the loop is only .75 mile.  After 3 laps, I was bored so I decided to head back towards the car, thinking maybe I would just run/walk the side streets at the trail head.  Well, about 100 feet into the 1.5 mile trek back to the parking lot, it started to snow.

Now I'm one of those winter weirdos that loves snow.  I don't mind training in it.  The trouble was this wasn't the soft, fluffy stuff.  It was mostly frozen and it HURT when it hit my face.  By the time I got back to the car, my face hurt.  In I went!  I hopped in the car and went home.  I stripped off a million layers of clothes, said hello to my still pajama-clad boys and went to the basement to dust off the treadmill. I wish I could say I was exaggeratting.  I haven't used the treadmill since before Megatron was born and it actually had cob webs on it.  :(  Once it was dusted off though, I revved up that ancient machine and knocked out a couple more miles.

I got some pretty cute visitors while I was down in the dungeon!

When it was all said and done, 5.3 miles outside and 2.7 miles inside, I tackled my furthest distance since January. It felt great! I'm still nervous about the race next month because my pace is still pretty off and I'm just not getting in the volume that I normally do but this is as good as it is going to get right now.  It might not be a lot in my eyes but at least I'm not giving up completely!  I will reclaim my pre-baby body!

Monday, December 2, 2013

Slow down!

Time just doesn't seem to ever slow down these days (well, except when it is the middle of the night and Megatron is taking his sweet time drinking/sleeping through his bottle).  I now understand why parents frequently say they wish they could stop time so their kids would stay small forever.  While I feel that way most days, I'm also thankful that Megatron is getting bigger and stronger each day.  It also means he's a lot more fun to hang out with these days since he smiles and coos at us now.  :)

It's been another rough month on the personal front but Megatron's health is stable and that is a huge thing to be thankful for right now.  I missed posting this yesterday, National Biliary Atresia Awareness Day, so here it is a day late.  The goal was to make at least one person aware of biliary atresia and the importance of organ donation.

The only cure for biliary atresia, the liver disease Megatron has, is a liver transplant.  A new liver will save his life someday.  It is as simple as that.  And as his mama, I would do anything to "fix" my little man.  The only thing I can do though is encourage every one I know to become a registered organ donor.  You can find out how to register in your state by visiting Donate Life America's web site.

OK, stepping off my soap box now.  :)  On the training front, with just over a month until my next 1/2 marathon, training is still a bit sporadic.  I got in 7 miles on Thanksgiving day though.  That was the longest I've gone since the 1/2 marathon in January when I was still in my first trimester with Megatron.  And after such a lack of training, those 7 miles were felt for a couple days!  I'll get get through that race somehow!

Tuesday, November 5, 2013

10 and 10: The Comeback

Whether I'm ready or not, my distance racing comeback is happening.  I'm officially registered for my 10th half marathon.  And it is two months from now.  Yeah.  Those who know me or follow this blog will know exactly which race I'm registered for too.  The Walt Disney World 1/2 marathon.  It will be my 10th year at the race either racing or coaching.  10 years!  That is mind boggling to me.  It doesn't feel like I've been slowly waddling my way through races for 10 years.

When I made the decision to do the 1/2 marathon this past January, I knew there was a good chance I'd be pregnant during the race (I ended up being 9 weeks prego on race day).  I even told The Pilot that if I raced in 2013 that I would HAVE to race in 2014.  I couldn't end my string of Disney races after 9 years.  I had to commit for  an even 10 and then let go of the Disney races (that sh!$ is expensive!).  Type A/OCD much??

And so here we are.  I'm 3.5 months postpartum and trying to figure out how to manage training with work, maintaining a household/home life and taking care of my special little Megatron.  Yeah, not as easy as I thought.  When I was still pregnant, I figured once baby arrived, I'd be able to run on the treadmill after the baby was down for the night.  Know what happens when the baby goes down for the night?  I go down for the night.  As soon as that baby's eyes are closed, I race to finish getting ready for the next morning and then I go to bed.  I'm so darn tired!

While I'm still trying to figure out the weekday workouts, I am slowly getting back into a weekend routine.  Two weeks ago I did a 4 mile walk with Megatron in the run stroller.  I was able to get up to Disney's minimum pace despite pushing all the extra weight so that was reassuring.

This past weekend, I snuck (which isn't a word apparently.  But "I sneaked" doesn't sound right.) out of the house while The Pilot and Megatron were still sleeping and met up with some friends.  I was obviously out of practice though.  While I did charge my Garmin the night before, I didn't check the forecast.  I threw on some clothes and was out the door.  Half way to the trail it started to rain.  Son of a!  I had no rain gear with me.  Not even a hat.  I did have a hooded sweatshirt that was intended to put on AFTER the run so I could run an errand before going back home.  On it went!  I was about to run/walk 5 miles in the rain with a cotton sweatshirt.  Ick.

It happened though!  I did a run/walk combination and finished 5 miles in just over an hour.  Not bad considering it's been MONTHS since I've gone that far and MONTHS since I've run at all.  Having friends to chat with (or listed too when I was too winded to converse) made it go by so quickly.  It was also nice to not have to push the stroller and be paranoid that the beast was going to wake up screaming 2.5 miles from the house.  :)  And for the record, I should have skipped the sweatshirt.  It stopped raining about .5 mile into the run and then I was just hot.  And it was heavy from that .5 mile it did get rained on.  Oh well.  I was just happy to get out there and try to feel normal again!

I at least had the sense to know I would basically be starting from scratch in terms of fitness so I have developed a "beginner" training plan despite this being my 10th half marathon.  That means I only have 5 miles on the schedule again this weekend.  I'm not positive when/where I will make it happen yet but it will happen!  I just need to figure out how to get in at least one weekday walk/run or this race is going to be a train wreck.  Just don't tell my BFF who is going to do the race with me.  I bet she didn't sign up to be the last one to finish!  :P

Thursday, October 31, 2013

What a strange trip its been

Last December I presented The Pilot with a gift, though I didn't share that story with the blog world until this past February.  So in the last 10  months we went from the excitement of finding out Megatron was on his way, to having a 3-month-old Megatron squirming in our arms.  It hasn't been the journey we expected but it's been a journey nonetheless and it's true....there is a new chief pilot in our lives!  That 11-pound bucket of goo is certainly in charge now!

Wednesday, October 16, 2013

It Takes A Village

I believe in hand-written thank you cards.  Call me old school but I think it is good etiquette and just the nice thing to do when someone gives you a gift or does something nice.  Plus, getting snail mail is fun and stands out from the mass amounts of email that people receive these days.

Having said that though, it has been impossible to keep up with the thank you notes between the chaos of our challenges over the last 3 months and also because of the outpouring of support we have received.  I did my "Thankful Thursday" post but we have even more people to thank since then!

My parents.  You have been my rock since the day I came into this world.  I don't even have the words to describe what it has meant to have you by my side through by far the most traumatic time of my life.  Mom, I might be in my thirties now but I don't think I'll ever outgrow needing you especially when times get tough. You are always there, even when it's 5 am and I'm alone at Children's Hospital, 100% overwhelmed and send you an SOS text. Dad, watching you be a grandpa warms my heart.

My brother, sister-in-law and your amazing kids.  You are all always my comic relief even during some dark times.  Brent, having you in the waiting room during Megatron's surgery was a wonderful distraction.  Dropping everything...including work, to make sure Megatron and I got back down to the hospital when The Pilot was away meant the world to me.  Lia, he was only able to do those things because you were juggling not only the kids but also another crisis an hour away.  Despite your dad being in the hospital, you somehow still managed to be there for us too.  And my sweet niece and nephew.  Boy I love you two crazy kids.  The cards you made for Megatron cheered us all up and your hugs always make me feel better.

My in-laws.  You've made the 2-hour drive to town multiple times at the drop of a hat to help us out. You've helped us keep information flowing to the extended family.  Beth, you even whipped out a diagram of the liver when a radiologist was trying to explain a procedure and draw a little picture at the top of a consent form.  Always prepared!  Plus, your homemade cookies also go a long ways when it comes to comforting the soul!  Steve, seeing Megatron smile at you is probably the cutest thing ever.

Lisa.  What haven't you done?  You have kept not just me and The Pilot fed with your amazing food but you've also jumped in to make sure our cats haven't missed a meal either!  You even bought more cat food while we were stuck in the hospital unexpectedly!  You coordinated a Meal Train to help other people take care of us.  You were there when I got bad news about Megatron's post-op lab work and stepped in and told me what to do when my brain was completely scrambled.  You held my sweet boy and even changed his diaper while I ran to pick up medications for him.  I will never be able to thank you enough!

Kelly, Meg, Ann, Mary, Jenni, Kami, Marcia, Julie Sarah and Jim.  You kept us fed with homemade meals, pizza delivery, grocery gift cards, hospital care bags and gift cards to use in the hospital cafeteria.  You also kept the kind words coming which helped more than you will ever know.

Lindsay, Ann, Parker, Mike, Caryl, Cara, Derek, Melissa and Lisa for just showing up at the hospital.  Smiling faces made the hospital seem a lot less like a prison!

Melissa.  Marathoning brought us together.  Your humor, foul mouth, realistic attitude and calm demeanor made you a shoe-in to be Megatron's pediatrician.  You have acted as "translator" when I have had selective hearing when all the specialist called me using lots of big, scary words.  You showed up at the hospital late at night to explain the PICU.  You've answered every frantic call and text.  You've answered every random call and text even though I told you I wouldn't be "that parent."  You even called every CVS in a 15-mile radius when we couldn't find formula.  You begged the GI specialist to take on Megatron despite her full case-load just because she was the "GI goddess" you knew Megatron needed.    We also have to thank your husband (and his "jinglers") and your children for their patience because I know we have pulled you away from them more than once.

Katy, Megan and everyone at the pediatric office.  Thank you for realizing you aren't just taking care of the patients but the parents too.  You are amazing at what you do.  Katy, not only do you take wonderful care of Megatron, but you also inspire me too.  Next stop, 1/2 marathon training baby! ;) I WILL get back out there.

Julie, Lindsay, Lauren, Jessie and Lezlie.  The best girlfriends I could have ever asked for.  You stepped up with encouragement, humor, baby clothes out the wazoo, baby gear, a breast pump that ended up being a life-saver when my preemie baby wouldn't latch, an "edible arrangement" and a storybook that made me tear up and will surely become one of Megatron's favorites (it's already mine!).  I love you all as if you were sisters.

Steve, Sharon, Matt, Patty, Penny, Don, Rick, Sharon, Ron and Dorie for the various support.  Because of you, our house didn't fall apart and Megatron's bum was always diapered (despite us being unprepared to use disposable diapers for so long!)and clothed.  Some of you were even on standby for when my parents weren't available.  I am so thankful to have grown up with such amazing role models.  I always have and always will consider you all my "extra parents."

My co-workers.  Love, support, prayers, GIANT cards and flowers were coming fast and furious from all over Central Ohio.  Your continued support is going to help me navigate the world of being a working mom so thank you in advance for that!

Robyn, Sue, Jennifer, Amy and Ann for helping me put things, post-Megatron's diagnosis, into perspective and for providing encouragement.  We have to be tough mama bears to shoulder the stress when it comes to our extra special babies.

Marcy, Mandi, Rosemary and Shelly.  You may not even realize how much a Vera Bradly bag, cute little newborn cloth diapers, a "rainforest" and a product recommendation have made our lives just a little easier.

Everyone on social media who have sent encouragement, prayers and lots and lots of "mojo."  There have been a lot of hard days but reading (and re-reading) your comments has helped me remember that tomorrow is always a fresh start.

I know in my sleep-deprived, emotionally raw state, I have forgotten someone.  If I have, I am deeply sorry.  Trust me, your kindness didn't go unnoticed at the time.

Monday, October 7, 2013

I Have A Confession

While my blog in no way represents all aspects of my life and I'm not a completely open book, I feel like I need to come clean.  Mostly for selfish reasons...I need to let this out.

I've been journaling since I was a kid and writing has always been an outlet for me.  When I'm having a hard time processing a heavy subject, it's always helped to write about it.  Sometimes if I can't seem to let something go, I'll write it down and it helps me move on.  I'm hoping this blog post does that for me.  I've never in my life had something weigh as heavily on my heart as this.

I've blogged about Megatron's surgery and how it's not fair but I haven't really gone into detail.  At first it was because it felt like it wasn't important to share the details with the masses (or with strangers).  It felt like if I shared all the details it would get everyone else all worked up.  It was about self-preservation too.  I wasn't ready to deal with the facts.  I wasn't ready to deal with the flood of emotions that would come once I accepted our reality.  I wasn't ready for everyone to really know what was going on for fear that we'd be getting a barrage of people asking questions, wanting to talk about it and know more.  I wasn't ready to talk about it more.  I still don't think I am but after avoiding people for the past month and realizing that this isn't going to go away, it feels like the right time to put it all out there.

It wasn't until after the surgeon got in and looked around inside Megatron that we officially knew his diagnosis, but we had a strong indication prior to the surgery based on the scans that were done.  After 6 1/2 hours of surgery, the surgeon confirmed Megatron has biliary atresia.  Once he confirmed that was in fact the condition, the surgeon performed the Kasai procedure.  Basically, Megatron was born without a common bile duct.  The bile duct is how bile flows out of the liver into the intestines to help with digestion.  Without it, bile backs up in the liver, which will eventually cause the liver to fail.  The Kasai procedure creates a passageway for the bile.  As The Pilot describes it, the surgeon "hot wired" Megatron's intestines directly to his liver, hopefully creating the needed passageway for bile to flow through.

Here's where it gets difficult for me.  The Kasai procedure is not a cure.  The procedure is buying Megatron time to grow and get stronger.  Only about 25-30% of kids born with this condition make it to adulthood with their own liver.  That means 70-75% need a liver transplant.  Sitting in the Children's Hospital GI clinic, holding my then 5-week-old baby, hearing he might need a liver transplant was the worst day of my life.  That was nearly 2 months ago and I feel like I'm only just now grasping what that means.  I wouldn't say I have accepted it yet.  Quite the opposite actually.  I'm more upset now than I was then.  I didn't want to believe it.  I went into the surgery thinking that maybe, just maybe, they'd find something else, fix it and we'd move on.  But that wasn't to be.

My sweet, tiny boy has liver disease.  Despite having surgery at 8 weeks old, he is not "fixed."  There is a greater chance that he will need a liver transplant than not..  We're going to face infections and other complications.  We're going to spend a lot of time at the GI Clinic at Children's.  He is currently taking 6 medications.  While that may go down a few once he's healed from surgery, he will take at least 2 medications for the rest of his life.  He may always have trouble absorbing vitamins and nutrients.  While he is growing well right now, he will be watched closely because he could easily stop growing due to not absorbing those vitamins and nutrients.

One of the first things that came to mind when we first heard the word transplant thrown out was "Oh my god.  He's going to go on a transplant list and we will wait forever for a little baby liver to become available."  Since they caught Megatron's biliary atresia so early, there is no reason to think the Kasai won't be a success.  He didn't have substantial liver damage yet (not all babies are as lucky as we are to have an amazing pediatrician and a world-class Children's Hospital that were persistent in watching his jaundice so carefully).  I still had to ask the question though.  Where would he get a liver if he needed one?  His GI doctor explained that more often than not it would come from an adult who was declared brain dead.  They would cut off a small portion of the liver to give to a baby and the rest would go to a small adult.  The liver is the only organ in the body that can regenerate itself, so I guess it isn't a big deal if someone is only getting a portion of a liver.  Sometimes, they will do a living donor.  A family member or other match can have part of their liver cut off and given to someone else.  The doctor did explain though that they don't like to have parents be the donor because then the remaining parent has two patients to worry about.  There is twice the risk.  It sounds like that wouldn't be an option for us anyway since Megatron's blood type doesn't match mine or The Pilot's (the poor kid had to get a rare blood type based on the recessive parts of me and The Pilot's blood types!).

Like I mentioned though, the Kasai procedure will hopefully buy him time.  The doctors have told us that the older, larger, and stronger Megatron is, the higher his chances are for having a successful transplant if he does need one sometime in the future.

Of course Megatron could be in that 25-30% that doesn't need a transplant.  He might be like a boy a nurse in the GI clinic told me about.  He's had the same GI doctor, and the same surgeon who performed the Kasai procedure on him when he was an infant.  He's now 21 years old, 6'2", still has his liver and is now transferring to an adult doctor.  He has "aged out" of Children's Hospital.  I've focused on that a lot.  That could be Megatron (though I highly doubt he'll be 6'2" considering I'm 5'3" and the The Pilot is 5'9").  There isn't any indication right now that that won't be our path.  The odds are against us but it could happen.  That's all I am holding onto right now....

...well, that, and the fact that this sweet boy is as cute as can be.  He doesn't look sick.  He hardly looks jaundice anymore.  He doesn't have a big, distended, hard belly like some babies with this condition have.  He's doing what normal babies his age (well, his adjusted age, since he was 5 weeks early) should do.  He's starting to track with his eyes.  He found his hands and loves to suck on his fingers.  He is smiling.  He's just our sweet boy that we are going to love no matter what.  We joke that he's our defective baby, but he's still ours.  We're going to stick to him like glue and navigate the world of biliary atresia together.  While this diagnosis sucks and I would give anything to fix him, we're going to keep plugging away.  We're going to do the best we can to take care of him.  We've already been lucky enough to have some of the best doctors in the world looking after him.  Like I mentioned in a previous post, we're just going to keep moving forward.

Having said that though, there have been and will continue to be a lot of tears, and lot of sleepless nights spent worrying more than the average new parent.  Bear with me if you see me and I start to cry when asked about Megatron.  Bear with me if I don't seem like my normal, organized self.  Bear with me if I am forgetful or crabby from lack of sleep.  Bear with me if I have no patience for petty problems anymore.  Maybe people will just chalk it up to me being a new parent...though I think this may last as long as this sweet boy and I are on this Earth together. 

After a particularly rough day, it was The Pilot who suggested I write it all down/blog about it.  He knew I would probably feel better if I put it all into words.  He had found it helpful to process it all by talking about it.  He had to fill in some co-workers and by telling the story a couple times, it got easier each time.  Since I've been on maternity leave for the last 11 weeks (just one more week left!), I've been a little more isolated.  I haven't had to tell the story as many times and its still very raw for me.  I do feel a little better getting it all out and I hope that by sharing it like this that more people will know what's going on with us.  It might help them know a little more about Megatron's condition and why we may have been a bit distant lately.  And to be honest, I'm somewhat hoping that the more I share on here, the less questions I may get in person.  Because I still can't guarantee that I won't cry or get emotional when asked.  I'm sure with time that will get easier.

Monday, September 30, 2013

Playing that card...

I've tried so hard not to play the "this isn't fair" card but it's a challenge to keep a positive attitude all day, every day.  Especially since we are now on day 13 of staying at Children's Hospital.  Megatron was in the hospital for 8 days after surgery but then a week after discharge, at his follow-up appointment, his lab work came back wonky.  We went back to the hospital, he went back under anesthesia and had some gunk drained from around his liver.  We are still waiting on the results and a plan.  For now, I feel trapped in this hospital.  I want to go home.

Walking around a Children's Hospital is interesting.  Sometimes it is sad to see so many kids with some pretty terrible conditions.  Sometimes it is refreshing because despite being in a not so fun situation, so many of these kids still do what they do best, be kids.  There is a kid on the surgical floor we are on that has been here for a couple months.  MONTHS.  Yet he was using his IV pole as a scooter and was rolling around the halls.   Kids really can find the fun in just about everything.

 Hey mom, I might be laying in a hospital crib but as long as you're here, I'm having fun!

And then there are the scenes that make me want to play the "this isn't fair" card.  The Pilot and I did everything right.  Megatron was very much planned.  We even aimed to have him at a certain time of the year when I wouldn't be so busy at work (didn't exactly work but you get my point).  This baby was wanted right from the beginning. I took every precaution, even the ones that probably weren't necessary but I didn't want to take any risks.  I didn't have any caffeine or alcohol my entire pregnancy.  I didn't get my hair colored.  I didn't even get a pedicure until my 3rd trimester (and ultimately the week before he arrived).  I ate healthy.  I exercised.  Yet my poor Megatron was still born with some missing/broken parts.  That's how it goes I suppose.  But then I walk around Children's Hospital and you see parenting at its worst.

I had an interaction with a man in the elevator.  He looked like a meth addict.  I hate to judge based on looks but he was filthy, smelled and had that meth head look.   He then told me his little girl was mauled by a pit bull.  Umm...ok.  The Pilot rode the elevator with a large man who commented that it was ironic that he was going outside to smoke while his kid was about to start a breathing treatment.  Wandering around the halls and all the different departments, we've seen parents who obviously have no interest in their kids.  Parents who have done something (or not done anything at all --neglect) that have landed their kid here.  And it's not fair.  Why is is that we did everything right and we have spent 13 days here?  And we will most likely be bringing Megatron here for follow-up appointments with a GI specialist until he's 18 or possibly 21 when he will transfer to an adult doctor.  We did everything right but that is going to be our reality.  It's just frustrating.

But then I'm put in my place.  I see a child in a wheelchair who obviously has very little brain function and requires a nurse 24 hours a day.  I hear parents being paged back to the pediatric intensive care floor. Sigh.  My baby, while still sick, can be treated.  It's going to be a rough road for us for sure but at this point, he can still be treated.  I try so hard to focus on that.  I try so hard to focus on those things I mentioned in my last post.   We do have so much to be thankful for.  I thought of something else to add to my list.  I'll be going back to work in 2 weeks.  Once we are all back home and we get into a routine that involves both of us working, and Megatron in day care or with my mom, our time will always be divided.  We will be pulled between work, keeping the household running and caring for our little man and ourselves.  Once we leave the hospital, it simply won't be possible to focus 100% of our attention on Megatron.  When you are trapped in a small hospital room, it is easy to find yourself just staring at a sleeping baby.  It's easy to tend to every fuss and cry within seconds of the sound escaping from that tiny body.  It's easy to focus and entertain the short-attention span of an 11-week-old.  Once home, his cry might have to wait another few minutes while a load of laundry is thrown in the wash.  Once home, as soon as his blinks start to slow and his eyes finally close, it will be a mad dash to get as much accomplished as possible until he's ready to be entertained again.   I'd give anything to take him home right now but I'm also trying to cherish the time we are getting to spend together because while nurses and doctors pop in from time to time, it's mostly uninterrupted family time.  Not many people get that opportunity.

It hasn't been all bad.  I haven't been confined to the hospital walls completely.  The Pilot was gone on a 4-day trip last week when Megatron and I returned to the hospital.  After being slightly traumatized by that experience and calling in the reinforcements (our families), when The Pilot returned, he sent me home for the night.  I slept through the night for the first time in over 4 months.  It was glorious.  Between the past 2 months of middle-of-the-night feedings and before that, having little man pushing on my bladder while I was still pregnant, I was long long long overdue for a good night's sleep.  I then also ran out to get my hair cut and colored yesterday!  A task I had wanted to do before I had Megatron but his early arrival changed those plans!

Those small things (that felt like big things at the time!) helped me regroup.  The timing was good because we are still in the hospital and The Pilot is getting ready to leave on another trip.  I'm trying to pump myself up.  While we have tons of help, when going through something crappy like this, I only want The Pilot by my side.  We are both stressed out and our nerves are shot but sticking together has made it all a little easier.  We've been pulling out all the stops to keep the mood light.  Of course our sense of humor maybe misunderstood (especially if we happen to, in good fun, refer to Megatron as our defective baby) but humor is just about the only thing keeping me together at this point.  It's the only thing keeping me from losing it completely and yelling out "it's not fair!"

Thursday, September 19, 2013

Thankful Thursday

Lately we've been very overwhelmed by life in general.  Learning to be parents while also dealing with an infant with a medical condition has been by far the most stressful thing we've ever been though.  After 8 days, Megatron came home from the hospital after his surgery.  We are still in a "wait and see" period as to if the surgery was a success but he is doing really well.  We are cautiously optimistic.

We've also been incredibly thankful.  That thankfulness is something I'm trying to focus on.  It helps me stay focused on the positive rather than the overwhelming stress.  And as a list maker, I made a list to help me stay focused.

So thankful for (in no particular order):
  1. Nationwide Children's Hospital and the amazing staff.  Especially the PICU nurses.  The overnight nurse never left our room.  Megatron was his only patient and he walked us through everything and reassured us each step of the way.  We're also very thankful to have a world class children's hospital right in our backyard.
  2. Our pediatrician.  While Megatron's surgery and GI issues are being addressed by specialists, our pediatrician was the one who stayed on top of the lab results those first couple weeks of his life and made the call to send us to a specialist.  She also showed up at the hospital while Megatron was in surgery and waited with us.  She was there when the surgeon spoke with us (and then translated the medical mumbojumbo for us) and she stayed with us while Megatron was taken from surgery down to the PICU.  She explained what we would expect when we saw him for the first time which definitely made it a lot less scary.  And did I mention that this was all after she worked a full day?  I'm sure it was after 10 pm when she left the hospital.
  3. Our families.  They have been with us each step of the way since Megatron's early arrival.  Both sets of our parents were with us most of the day while Megatron was in surgery.  My brother was there also.  My sister-in-law was with my niece and nephew so my brother could be with us.  My niece and nephew made cards for Megatron to cheer him up after surgery.  I think we both would have cracked under the pressure without their support.
  4. Our friends.  I cannot even begin to explain how touched I am by our friends.  They stepped up in ways that have often left me speechless.  They have dropped off meals, snacks, hospital care bags, even gift cards to use at the cafeteria in the hospital (8 days of meals in a hospital can add up!).  They helped feed our cats, take in the mail and bring the trash cans back to the house.  They sent cards and emails full of encouragement.  They texted and sent Facebook love.  They added us to prayer lists.  They visited us in the hospital.  I will never be able to repay them for everything they have done (and I'm sure will continue to do as we go through the recovery process).
  5. A 12-week maternity leave.  I'm still on maternity leave.  Not having to even think about trying to work through all of this has been priceless.  I don't think I could have done it!  It has allowed me to be with Megatron through all of this without even thinking about working around a work schedule.
  6. FMLA.  The Pilot took 6 weeks of leave after Megatron was born.  We decided to have him take an extended leave, even though it was unpaid, because his job is so unique.  It's one thing if he went to work and came back each night.  I wouldn't have the luxury of getting a break each evening if he worked a normal 9-5 job.  The Pilot going back to work could mean me being on my own with Megatron for days at a time.  So to help us all figure out the learning curve, he stayed home for 6 weeks.  Then Megatron needed surgery.  The Pilot went back to work for a week and now has taken another 2 weeks of FMLA so he could be here for the surgery and recovery.
  7. An emergency fund.  Eight weeks of no income for The Pilot and 12 weeks of reduced income for me and now a mountain of medical bills.  Scary.  I'm so thankful that we have an emergency fund.  Granted we always thought that fund would be used in case The Pilot was furloughed but that back-up plan is keeping us from also having a financial crisis.
  8. Humor and Forgiveness.  I've sometimes wondered how I would react in a crisis and how The Pilot and I would handle a crisis together.  Luckily we haven't lost our sense of humor.  It really is a coping mechanism.  We've done our best to see the fun in an awful situation.  While there was been A LOT of tears over the last couple weeks, and the last 8 days in particular, there have been a lot of laughs.  It's also been important for us to forgive.  You simply cannot hold anything against each other.  Especially for anything that is said or done between the hours of 9 pm and 7 am.  Nights are tough.   It feels like we are reliving the first 2 weeks of Megatron's life again in terms of sleep deprivation.  It's easy to snap at each other in the middle of the night when your baby is screaming and you don't know if its because he's hungry or if he's in pain from the major abdominal surgery.  Once the sun comes up though, all is forgiven/forgotten.  You get to start over.  Ultimately though, I'm thankful for my husband.  We've been a team from the day we got married and we've handled this situation as a team.
  9. Wifi and cell phones.  While The Pilot and I are still living in the stone ages with our "dumb phones," we were able to keep friends and family updated throughout this hospital stay.  We had a laptop with us in the hospital (which had wifi) so we could sort of stay in touch with the "outside" world.  Time seemed to stand still while we were in the hospital so zombies could have taken over the world and we wouldn't have known but at least we were able to send out updates to friends and family.
  10. Quilted toilet paper.  We basically lived in the hospital since the day before surgery.  It's sort of a combination of a bad hotel and a dorm room.  It took us a couple days of using sandpaper for toilet paper before bringing a roll from home.  :)
  11. Microsoft Excel.  I'm a planner.  I like to be organized.  Normally I thrive when it comes to lots of little details.  But for some reason I was completely overwhelmed by the medications Megatron needs.  I've been terrified to mess it up.  Some are once a day.  Some twice a day and then there is one that is every OTHER day.  The doses are all different.  Two of them can be put directly into his bottle.  There is a basket in our kitchen full of dosing syringes and bottles of medications.   I needed a spreadsheet.  I basically made a sheet with each medication and when it needs to be taken so whomever is caring for Megatron can just check off the medications that he has received so none are forgotten.

Sunday, September 8, 2013

Working Up a Sweat...On A Learning Curve

This past week I hit the trail near my house with Megatron in the BOB twice.  The first walk was just the two of us burning up the trail.  Not really.  I did 2.5 miles at a really slow pace.  The Pilot joined us for a second walk of about 3 miles.  Again, it was slow going but it felt good to work up a sweat.  I wore the Garmin more out of curiosity to see where I'm at after such a long stretch of not working out.

There is a big learning curve for me though.  One, I feel like I'm starting from scratch.  As in, back in 2004 when I walked my first mile to train for a 1/2 marathon.  Two, I'm pushing 40+ pounds of stroller, infant seat and infant.  Three, I'm still carrying about 8 extra pounds of my own weight.  I realize that is pretty good for only 8 weeks post-partem but it certainly changes my gait.  That's not even considering the other physical changes to my hips and all that jazz.

I'm going to have to get used to pushing the stroller because when The Pilot is away, I can't just not work out.  Megatron best get used to the BOB too!  Since I have to obviously use at least one hand to push the stroller, I can't get into a the proper race walk form (or run for that matter).  I tried to push with one hand and walking to the side of the stroller so I could at least swing the other arm but that felt awkward and I kept kicking the tire.  I think it will just take some practice and trying different things until I get the hang of it.  I also discovered that the beautiful, tree-lined streets in our neighborhood make for very bumpy sidewalks.  Now I know why I have seen moms pushing strollers in the street.  Luckily it isn't too far from our house to a trail that, which with the exception of the very first part, is pretty smooth.

 Woah, where am I? 
(And for those who are safety conscious, or if our pediatrician is reading, don't worry, those car seat straps get cinched down when in motion.)

The comeback will be slow but it was begun!  Plus, with the stress of Megatron's surgery, hospital stay and recovery, I need to keep getting out there to attempt to stay sane.  I'll let you know how that goes.

The trail ends at an elementary school with a map of the US painted on the we left Megatron in Texas for a quick visit.

Wednesday, September 4, 2013

I Didn't See That Coming

Not long after we brought Megatron home from the hospital he had his first "episode."  One that I think stopped both mine and The Pilot's hearts.  He turned bright red, arched his back, limbs went rigid and didn't appear to be breathing.  Luckily my infant CPR/choking training kicked in and I just picked him up, flipped him over and started slapping his back.  He finally gasped and started crying.  And then I started crying.  Sigh.  His amazeballs pediatrician thought it might be reflux but suggested we wait to see if he did it again.  He did.  And I think my heart stopped again, even though we felt more confident that he would be ok.

While I was pregnant I actually had hoped Megatron wouldn't be a gassy or colicky baby.  I had heard the horror stories.  And then I found myself giving a syringe full of Zantac to my baby twice a day.  Sigh.  Not fun at all.  Surprisingly, he takes it really well most times.  He just starts sucking on the syringe as if it was his bottle.  Still, having a baby who doesn't feel well sucks.  Heck, I had reflux throughout my pregnancy and you all know how much I whined about it.  Poor Megatron doesn't have the ability to whine yet so he just cries and arches his back.  And my heart aches for him.

But the reflux almost seems like a drop in the bucket compared to the news that came a couple weeks ago.  Megatron was jaundice so for the first 3 weeks of his life we had to have his blood drawn every 2-3 days.  It was not pleasant.  But finally the bilirubin levels started to go down and we were given the ok to wait 2 weeks until the next blood draw.

During that time we did our best to figure out the whole parenting gig.  It was rough!  The sleep deprivation is no joke.  There is nothing that can prepare you for that.  The Pilot was still home on FMLA to we kind of just holed up and tried to figure out the family of three thing.  Megatron was looking a lot less "tan" (from the jaundice) and was starting to get some meat on his bones.  We took those as good signs so when the results from the blood draw came back, we were pretty taken aback.

The bilirubin levels had gone back up.  Not good.  While jaundice is fairly common in newborns, especially breastfed preemies, it usually goes away by 4 weeks.  That wasn't the case for little Megatron.  The levels going back up indicated his liver wasn't excreting properly.

Enter the longest and most stressful week I've ever experience to date.  We made 3 trips to Children's Hospital, spending the majority of each of those days having tests done.  There was an ultrasound, lots of blood work and several scans in the nuclear medicine department. Most of it was much more traumatic for me and The Pilot than it was for Megatron.

We remained optimistic that maybe he was just having trouble since he was born early and just needed a little extra time to get rid of some sludge in his liver.  No such luck.  The doctors think he is either missing some plumbing around the liver or it is blocked.  Either way is not good and the only way to fix it is surgery.

When we found out, I felt like I had been hit by a bus that I didn't see coming.  In the two weeks since we found out he would be having surgery, there have been a lot of tears, anxiety and heartache.  This wasn't part of the plan!  Just when I feel like I'm getting a grip and coming to terms with what is coming, I'll have a set back and the fear creeps back in.  I'm doing my best to stay positive but there are times, especially when I'm feeding him and he looks so peaceful and perfect, when I just find myself crying.  There is a good chance he will need medication and monitoring for the rest of his life and that's not something any parent wants for their child.  I try to tell myself that it's not any different that me having asthma that requires daily medication.  It's no different than having diabetes or allergies.  But again, I don't want that for him.

Luckily because he's so small, he won't remember any of this and he will grow up not knowing anything different.  Also, hopefully I will have come to terms with all this by the time he's old enough to start asking why he's not like the other kids.  I've already come up with a story to explain the scar he's going to have on his belly....he was shanked by another baby in the intensive care.  All the other kids will think he has street cred. 

His surgery is next week so the blog is probably going to take a backseat for a little while.  He'll be in the hospital for awhile and we just don't know what to expect.  I've never been a "let's wing it" kind of girl but this sweet baby has other plans for me.  It's going to be a stressful couple of weeks for us but like with anything else I do, I'll just do my best to keep moving forward.  That's one skill Megatron is having to learn early on but will serve him well.  Just keep moving forward little man!

Thursday, August 22, 2013

Don't Eat Yellow Snow

One of my "lessons for our son" was to not eat yellow snow.  It's a good life lesson, don't you think?  Now Megatron has a daily reminder.  One of my dear friends made this sign for him and gave it to me at the baby shower my training friends threw for me the week before Megatron arrived...

And it now sits on top of Megatron's dresser.  I love it!

My friend also made this for me and I hung it up on the wall just outside Megatron's nursery.  She has 2 little boys herself so she knew before Megatron was even here that he was going to steal my heart.  That is an understatement for sure!

Sunday, August 18, 2013

A post-partem update: 5 weeks

I thought I'd do another update post sort of following the same format as my weekly pregnancy posts.  They say the first 3 months with a new baby is really the "forth trimester" so I thought I'd do just a couple more of these updates.

How far along?  5 weeks post-partem
Maternity clothes?  Yes and no.  I lost 20 pounds within the first week after having Megatron.  Most of the remaining weight seems to be in my lower belly and my chest.  Without going into too much detail, I had hoped there would be an advantage to the "girls" in that I would end up being the Dairy Queen.  And for the most part that has become a reality.  The downside to that is dressing my new shape.  The majority of my maternity shirts are too large in the torso yet too small in the chest.  Only a couple of my pre-pregnancy tops fit.  I'm still wearing maternity shorts/capris but they are too big.  But my pre-pregnancy shorts are too small in the hips.  I've been able to wear some lounge-wear and some workout gear which is great around the house but not so much when its time to venture out.  I lucked out and Target was having a sale. . . an additional 20% off all clearance clothing.  I picked up a couple tops one size larger than my usual size which was just enough extra room in the chest.
Have you started to show?  Depending on what I'm wearing, I don't think I look pregnant anymore.  Knowing what I looked like before though, I'd say I have about a 3-months pregnant look to my mid-section. 
Symptoms:  Well, the evil things like heartburn, hip and back pain have gone away!  Almost all of the symptoms from the HELLP syndrome have also gone away.  My blood pressure is back to my normal 110/75 range and no more chest pain!  I was slightly anemic when I left the hospital so I'm still on an iron supplement to help remedy that.  I go this week for a follow up on that.  My body is still figuring out post-partem life though.  There is still some unpleasantness that I won't get into on the internet.  If you've had a baby that wasn't born via c-section, then you know what I'm talking about.
Activity:  Does feeding a baby every 2-3 hours, pumping breast milk every 3 hours around the clock (more on that later) count as activity?  If so, then I'm really active!   I've really started to feel better in the last week so I've been moving around a lot more.  There was the walk the other night and I hope to slowly keep at it so I can try to get back into a decent workout routine.  I've also got a post-partem mom and baby workout DVD that I'm just waiting on the OK from my doctor to try out.
Best moment this week:  Watching "Happiest Baby on the Block" and realizing the tips for soothing a crying baby really do work.  There was also some nursing success!  Since Megatron was early, he wasn't ready to latch on consistently.  He's figuring that part out but now the challenge is his endurance...or lack there of.  He takes a bottle like a champ but the extra work required on his part to nurse leaves him sleepy.  He's too dang small to just let him work at it.  He needs to eat.  So that means nearly every 3 hours for the last 5 weeks I have been pumping in order to meet his demands.  It's exhausting, but we met with a lactation consultant who worked with us and helped us come up with a game plan.  So far its working!  Megatron is now nursing every 2-3 feedings and taking a bottle of the milk I pumped for his other feedings. 
Miss anything/movement:  I'm combining these because I miss the movement.  I didn't think I would but I do miss some of those little flutters.  I certainly don't miss the jabs to my bladder or rib cage but it is a bit surreal to watch Megatron kick and twitch on the outside now.  When I'm cradling him in my arms and a hand or foot twitches, it is as if I am watching the movements I felt from the inside for so many months.  It's so surreal!
Food cravings:  While I'm not quite as hungry as I was in that third trimester, I'm much more hungry than I was pre-pregnancy.  Nursing works up an appetite!  I'm also not picky at all.  I told The Pilot that I feel like I can be easily influenced.  I can see a commercial for some food item and then will want it.  He can suggest something for dinner and then I'll suddenly want that.  I will say the best food has been the food that others have brought for us!  Some homemade, some takeout, it doesn't matter.  People bringing food is probably one of the most helpful things in these first couple weeks (second only to my parents coming over so The Pilot and I can take a nap!).
Gender:  I had this slight fear we'd plan for a boy and then be surprised if a girl actually came out...but Megatron is in deed a boy.  :)  Most definitely a boy as both The Pilot and I have been peed on already.
Looking forward to:  Surviving the first 3 months.  Everyone tells us the first couple months are the most difficult.  I'm holding out hope that it will indeed get easier.  I'm also looking forward to being able to sleep for more than 3 hours at a time.
Not looking forward to:  As if Megatron's arrival wasn't stressful and scary enough, little man has had a few complications.  Most likely from his early arrival but he has jaundice that just won't seem to go away.  We have more testing at the local Children's Hospital and then will have to wait for the results.  I'm not looking forward to any of it!
Milestones:  All three of us survived the first month!  That's all I can ask for!  :)

Friday, August 16, 2013

A Milestone

To celebrate surviving one month of parenthood...and you know, to celebrate Megatron's one month birthday, we ventured out for a walk.  We took the Caddy with us, strapped that baby in and took off...very slowly.

We met up with the group I had been training with early in my pregnancy for one of their group trainings.  To say Megatron was a big hit was an understatement.  Only one person from the group had actually met him and I hadn't seen any of them in quite awhile.  It was so nice to see everyone and be welcomed back.

 I missed this gang so much!

Megatron seemed to enjoy the ride...he slept through the mile and a quarter stroll down the trail only waking up at the very end to let us know he was hungry.  As for the stroller, it worked out great.  It was a little cool and breezy so we pulled both his car seat canopy and the canopy on the stroller to create a little shelter for him.  The window on the BOB's canopy allowed me to watch him for the entire walk which was great.  The stroller rolled like a dream on the blacktop but also did well when we took a short detour through some grass.


Only trouble with the stroller was that I tried to fold it up myself and couldn't figure it out.  The Pilot stepped in to collapse it though.  I told him that I need to practice folding and unfolding it in the garage before I go anywhere alone.  I'd hate to be somewhere and not be able to fold it up.  It barely fits in The Pilot's trunk when folded.  We haven't even tried it in my car yet.

The walk, while slow and short, was much needed.  Megatron has had to have some medical tests done recently to make sure he's staying on track (more on that in another post) and it's been stressful.  My way of dealing with stress has been to workout and since I haven't been able to workout for so long, it was great to get outside to get some fresh air and have a distraction.

It felt important to me to go through all of the motions even though it was going to be a short and slow walk.  I could have just as easily left some casual clothes on but I "suited up;" putting on running shorts, a technical shirt and my running shoes.  I even put my Garmin on.  (1.27 miles if you are interested!)  I wanted to feel like my old self and try out getting ready while also getting Megatron ready to go out the door.  Which is not easy.  Making sure he's fed, changed and safely strapped into his car seat (which is still awkward because he's so small) takes quite a bit of time!  But we managed and we made it to the group training on time.  One point for the new parents!

Hopefully we can slowly start adding more short walks each week.  Even though it was only just over a mile last night, it wore me out.  Mostly in my core, which seems to be non-existent since giving birth.  I get really tired after standing or walking around for too long.  I'm not sure if that is simply because of delivery and being not so active for the last month or if it's still some recovery from HELLP or maybe a combination.  I'm looking forward to getting stronger and I'm not too frustrated by it yet.  Of course I had hoped to be a little more active by this point but after Megatron's unexpected arrival, I'm learning to not have any expectations right now and to just go with it!  I was just glad we made the effort to get out, no matter how short and slow!

Tuesday, August 13, 2013

A Cadillac

Eighteen hours before giving birth to Megatron, The Pilot and I were at Babies R Us haggling over the price on the Cadillac of running strollers, the BOB Revolution SE.  It felt very much like buying a car.  They weren't going to honor the online price of a stroller they had in the store.  And trust me, when you are trying to buy a stroller with a suggested retail price of $450, you will haggle to get the best deal.  Ultimately we won, got a great deal and took that bad boy home.  Unfortunately by the time we got it home, I was really starting to feel bad.  I was waiting out the hour my doctor gave me before going to the hospital while The Pilot opened the stroller.  A cat immediately had to check it out...

That cat loves a new box!  The Pilot got the stroller out of the box but that's when I talked to my doctor and we dropped everything to go to the hospital.  The stroller was sitting in the family room.  Later that night my dad went to our house to pick up a few things once we realized we would be staying at the hospital.  When he returned he asked us what "that huge thing" in the living room was.  Oh that's just the mother of all strollers!

We've only used it once so far when we took Megatron to a festival at the church I grew up attending.  We had to do some off-roading so we took the BOB since it has shock absorbers.  I'm not kidding when I say this stroller is nicer than my car.

I am hopeful I can use it soon to take an actual walk.  I haven't been given the OK from my doctor to start working out yet but I go in next week for my official 6-week post-partem appointment.  To be honest though, this week is the first time I've actually started to feel better.  Both Megatron and I are still being monitored for our various ailments so between doctor appointments and his "I MUST eat all the food RIGHT NOW" feeding schedule of every 2 hours and me still recovering from delivery and HELLP syndrome, it's been hard to get out and about much. 

When we are both given the ok, you betcha we'll be putting some miles on that stroller!

Wednesday, July 31, 2013

Kindness and Spunk

The Pilot and I named Megatron for my grandma (No, she was not an 80s cartoon villian...Megatron's legal name is a variation of her name).  I've always been really close with my mom's mom so there wasn't much question about honoring her through our baby's name.

She was actually the reason we told our families we were pregnant with Megatron when we did.  Right before last Christmas, my grandma's health started to decline.  My mom (a hospice nurse) helped set her up with part-time hospice care to help her and my grandpa look after grandma.  We weren't planning to tell our families we were expecting for another couple of weeks but I wanted to make sure my grandma knew she was expecting another great-grandchild just in case something happened.  I told my grandparents on Christmas Day and they were both so excited!  I honestly think my grandparents both enjoy being grandparents and great-grandparents better than being parents!  All the grandkids are their reward for not killing their own kids! :)

I've never considered myself a religious person but I do believe that everything happens for a reason.  Of course the reasons for things aren't always obvious, which can be frustrating when trying to make sense of difficult and challenging situations.  Other than medical reasons, I felt like I was trying to wrap my head around the reason Megatron came early.  And then the reason became clear.

For that first week of Megatron's life, we were in the hospital and then had some follow up appointments and lab work for him.  That entire week, my grandpa checked in a couple times a day with my mom to check on all of us.  My mom had called him when Megatron was born and shared his name and had him tell grandma that his middle name was for her.  He mentioned that he would bring my grandma down to our house so they could meet Megatron once we were ready.  That first week though, we weren't quite ready for visitors between me not feeling well and Megatron's appointments.

On Monday, when Megatron was one week old, I got a call from my mom.  She mentioned that my grandma wasn't doing well and suggested we come to see her rather than my grandpa bringing grandma to us (we live about 30 minutes away).  It would be our first non-medical outing with Megatron.  So on Tuesday morning we packed him up and headed to introduce Megatron to his great grandparents.

My grandma was pretty confused and I don't think she knew who we were but she kept touching Megatron's foot.  She commented on how big his "suit" was (he was wearing a onesie with monkeys on it, which even though was a newborn size, he was swimming in it!) and that he was a "skinny baby."   It was difficult for me to see my grandma in that condition and it took all I had to keep it together.  I wanted to remember it as a sweet moment and not a sad one.  And I'm so glad that I was able to keep it together while we were in the room with my grandma.

Forty-eight hours later, my grandma passed away.  My mom has shared that many of her hospice patients are often waiting on someone to come see them before they pass.  It almost always happens that way.  I have no doubt in my mind that my grandma stayed with us long enough to meet Megatron.  I also believe that this was part of the reason Megatron needed to arrive early.  I am so thankful that not only did my grandma get to meet her great grandson but she also knew that he was named for her.  I've always hoped she knew just how special she was to me but having her know that we named our son for her meant the world to me.  While I knew that Megatron would never get to know my grandma the way I did, it breaks my heart that I didn't get the chance to talk to my grandma more about him.  She didn't get the chance to know him at all.  But I will always cherish the fact that they did meet.  I didn't think that she would remember but the morning after our visit, she told her hospice nurse that she met a baby the day before.  So she did remember.  She may not have realized who that baby was, but she did remember.

The Pilot was there and took some pictures.  We will be able to share the pictures and story with Megatron about that visit.  I'll also have to share all of the wonderful memories I have of my grandma with him.  She was kind and funny with a whole lot of spunk.  I hope that I'll be able to pass along those traits to him.  If he ends up only being half has kind as my grandma was, then he will be better off than most!

To say it has been an emotional two weeks is an understatement.  Between the trauma of my delivery and Megatron's early arrival, the hormones associated with having just had a baby, and the loss of my beloved grandma, it's been a very difficult time.  I just hope that things settle down for a little while so we can all focus on healing.

Tuesday, July 30, 2013

A Letter to The Pilot: Year 2

Dear Pilot,

Two years ago today I wrote you a letter.  I've referred to that day as the "first day of my life" and we even used a song to commemorate that.    It was our wedding day.  And while there have been countless special moments we've shared since that day, it remains one of my favorites simply because it was the day we made it official to be partners in crime until the end.  And man have we had fun in the last two years!

I wrote you another letter on this day last year exclaiming that I loved you even more a year after our wedding than I did on our wedding day.  And here we are a year later.  I never imagined it possible but another year into our marriage, my love for you has grown even more.  Of course there have been ups and downs, but with you by my side, I feel like we can conquer anything.

This anniversary is extra exciting as we have gone from a family of two to a family of three.  Before I met you, I was fairly certain I didn't want a child but now, I cannot imagine our lives any differently.  You've given me something I didn't even know I wanted.  Seeing you as not just a husband but a dad has been amazing.  I knew you would be a great dad but seeing you in action has me awestruck.  Thank you for taking such great care of me and our son!

Happy 2nd Anniversary.  I love you.

The Wife

Sunday, July 28, 2013

Megatron's Grand Entrance

Settle in.  This is going to be a long one!

It’s taken some time to process the last two weeks of our lives.  I don’t know that I have fully grasped it all or if I ever will.  I think I will be forever overwhelmed by the day we became parents.

After my doctor gave me the HELLP syndrome diagnosis, she calmly told us that it was time to have a baby.  It feels like a lifetime ago that she said that but I know I cried.  It wasn’t supposed to happen this way!  The Pilot and my mom were both in the room, which was a comfort.  She explained that while it was still early, it really was the best thing to protect both me and the baby.  I knew in my heart that it was the right decision but my head was so conflicted.  

We tried to keep calm despite the stress.  Obviously we grew up in the 80s....
My doctor checked and much to everyone’s surprise, I was already 3 centimeters dilated.  While I could have easily walked around at 3 cm for the next 5 weeks, it sort of made me feel like it was all meant to be; that our baby was supposed to arrive early and I instantly felt better about what was happening.

I was admitted to the labor and delivery floor of the hospital late on Sunday, July 14, 2013.  An IV was started and they gave me magnesium sulfate for the HELLP syndrome (my understanding is that it is a muscle relaxer that would help protect me from having a seizure) and Pitocin to induce labor.  As they got the IV started, my doctor checked on me one more time before leaving for the night.  I was told I would need a catheter but I didn’t understand why at the time so that was when I asked my doctor if I’d be able to walk around.  When she told me no, I cried for the second time that night.

I was hoping for a natural birth, with as little medical intervention as necessary.  I’m also a realist and knew that this was something I had never experienced.  I didn’t naively go into childbirth thinking that I could handle it without pain medication.  The Pilot and I researched all of the options, read up on ways to naturally deal with pain but also learned about the different medicinal options I would have once in the hospital.  I wanted to go in with an open mind.  I would try a natural birth, but if that wasn’t in the cards, then I would let it go and accept it.  As long as the outcome was a healthy baby, then the “how” he got here wouldn’t matter.

So when the doctor told me that due to the magnesium sulfate I was on, I would be in bed from then until 24 hours after delivery, I was naturally upset.  I was a fall risk (since it is a muscle relaxer), had to be continuously monitored because my blood pressure was going up, plus they were keeping a close watch on the baby’s vitals also.  Part of dealing with childbirth naturally is walking around.  It’s bouncing on a stability ball.  It’s doing everything except lying on your back in a hospital bed.   The Pilot was the one who had to step in to explain to the doctor and nurses in the room why I was upset.  I’m sure I was sitting there crying with a look of panic on my face.   Again, this was not how I envisioned my baby’s arrival.  But I had to roll with it. 

I asked that I at least be told when I was approaching the “point of no return” when it came to making a decision about an epidural.  I really wanted to labor as long as possible without any pain medication.  The only reason I was even still considering an epidural-free delivery at this point was that I had a break in the chest pain.  They had given me something high strength for acid reflux that seemed to ease the pain in my chest a little.  My doctor then hit me with the next blow.  Because of the HELLP Syndrome, my platelet count was low.  My liver wasn’t functioning correctly.  Both were working against me.  You cannot receive an epidural if your platelets are too low.  Basically, if I waited on an epidural, there would be a chance my platelets would be too low and it wouldn’t be an option any more.  The decision would be made for me.  No epidural.  My doctor also warned that if my platelets dropped and I ended up needing a c-section, I would have to go under general anesthesia.  Meaning I wouldn’t be awake for the birth of my baby.  That was NOT an option for me.

They let me think that over for a little while.  And in that short time, the pain in my chest returned worse than ever.  It felt like I couldn’t breathe it hurt so badly.  I’m not kidding when I say I thought my heart was just going to stop.  

Around 2:30 am on Monday, July 15, the resident OB broke my water.  Thirty minutes later I opted for the epidural.  Not for labor pain but for the chest pain.  The resident assured me that an epidural was still an option and that it would help with the chest pain.  I knew I had a long night of labor ahead of me plus I would need the energy to actually deliver.  So in went the epidural.  The chest pain was gone within 15 minutes.  And I was able to rest.  Clearly that was the best decision given the circumstances.  

I tried to sleep but my head was racing, thinking of all the things that hadn’t been done yet at home.  I was supposed to have a couple more weeks to prepare!  While I had a couple baby showers and we had a lot of the basics, there were still things we needed.  I also hadn’t fully prepped the people who would be filling in for me at work.  The Pilot was sleeping on a couch in my hospital room and I didn’t want to wake him up(he hadn’t gotten much sleep recently either), so I finally asked the nurse for a piece of paper and a pen.  It was probably 4 am.  I told her I needed to make a list or I’d be awake all night.  So I made a list…and then got a little sleep.

The resident checked my progress a couple times during the early morning hours, and I was moving right along.  Faster than I thought!  I kind of panicked when they said I was 8 centimeters.  It was about this same time that I started to feel the contractions.  The epidural was wearing off and the contractions were getting stronger.  Part of me was glad that I was feeling something so at least I would know when to push.  And of course the other part of me wanted more drugs because the pain was returning!  

Not too long after that my doctor returned.  I was 9 centimeters.  Say what? The pain was definitely increasing to the point I couldn’t talk through the contractions.  I had to close my eyes, hold The Pilot’s hand and focus.  I didn’t need to be told when the contractions were coming but at some point the nurse or doctor started talking me through each one and gave me the option to do some practice pushes.  That’s all it took to get to the full 10 centimeters.  It was business time.

The Pilot stood right next to my head and counted to ten, three times for each contraction.  In between the contractions I was able to lay back and relax a little (after the doctor reminded me to relax!).  It seemed like time stood still yet moved so fast at the same time.  I felt like I was only pushing for a couple minutes when my doctor told me to open my eyes; that the baby was almost there.  I wanted to tell her I wasn’t ready.  I needed more time! But I opened my eyes and in that instant, she placed my baby boy on my stomach.  I didn’t even know just how “almost there” I was!  I knew the pain went through the roof but I didn’t realize that it was because the baby was well on his way out.  It was like an out of body experience.  I was there but not really.  Luckily instinct kicked in and I grabbed my baby and pulled him closer to me.  I started crying and I can remember feeling overwhelmed and in love…yet also like I was watching a TV show.  It was like it was happening to someone else.  I later found out that that feeling was most likely the result of the magnesium.  The longer I was on it, the foggier my brain became.

My doctor had warned us before I started pushing that it might be a little scary when the NICU team arrived in the room.  She explained there would probably be 5-6 people all working to prepare for the baby’s arrival but that it was standard for the early babies.  To tell you the truth, I barely noticed when they arrived.  I was already focused on getting through each contraction and pushing that I didn’t notice just how many people were in the room.  The Pilot commented later that it was a little scary.
I was only able to hold my baby for a minute before the NICU team took him and started working on him in the room.  Little man came out kicking and screaming but because he was early, he needed a little help.  From my understanding, they gave him some oxygen, but not much and it wasn’t under pressure.    I was pretty fuzzy during this time, partially because of the magnesium and partially because I was still in shock of what had happened and how fast it happened.  I had only been in labor for 5 hours.  I had only been pushing for 20 minutes.  

The Pilot hadn’t left my side and it was my doctor who told him to go meet his baby.  He walked over and stayed with the baby while my doctor tended to me.   A few minutes later, they brought Megatron over to me, a little more cleaned up, with a hat on and wrapped in a blanket.  I was able to look at him and kiss him just for a moment before they took him to the NICU.  As they left the room, it felt like my heart was on the outside of my body and was being rolled away from me.  In my fuzzy, exhausted state, I suddenly became a mom and the worrying started.  And I know it won’t end until I leave this Earth.

I had to consult with the The Pilot about what happened after that.  It all got really fuzzy.  While my symptoms from the HELLP Syndrome continued to go away after delivery, the magnesium sulfate made it very difficult to stay alert.  I do remember commenting to my doctor that labor took less time than it takes me to do a full marathon so I was having a hard time deciding which was more challenging. I also threw out there that because he was early, I’d have an extra month to prepare for what I’m eyeing as my “comeback” race.  Trust me though, this was all said as a joke.  I wasn’t seriously thinking about my “comeback” while my doctor was doing some repair work.  Humor is how I deal with stress.

Once the NICU team was ready to roll, they had The Pilot follow them so he would know where they were taking him.  I guess my parents were pacing right outside my room and were able to see Megatron as the rolled him down the hall.  I don’t remember how long The Pilot was gone but he came back and told me that he looked great and that he would be able to go back to check on him once they got Megatron all set up in the NICU.
I’ve been through some pretty rough challenges in my life but the 24 hours after Megatron’s arrival was the most difficult thing I have ever experienced.  Because I wasn’t able to get out of bed, I wasn’t able to see Megatron.  Since he was in the NICU, they couldn’t bring him to me and I couldn’t go to him.  It was excruciating.  I took comfort in knowing that The Pilot was able to go down to check on him as often as he wanted, but I wanted to see my baby.  Again, this wasn’t what I had envisioned for my baby’s first day!  The Pilot took lots of pictures and video and would come back to my room to share them with me.  I cried every single time.  My family and The Pilot’s parents all came and all took turns visiting the NICU with The Pilot (Only 2 people were allowed in at a time and one had to be a parent).  I was jealous that everyone else was getting to see the baby and I couldn’t. 

It also didn’t help that I felt pretty awful.  The longer I was on the magnesium, the more fuzzy my brain seemed to be.  People were coming and going and I couldn’t keep my eyes open.  I wanted so badly to look at the pictures on The Pilot’s camera over and over but my eyes wouldn’t stay open. 
Twenty four hours after delivery, I was taken off the magnesium and was released from the labor and delivery floor to the post-partum floor.  Before taking me to my room though, I was finally able to see Megatron.  I can’t even begin to describe what that moment felt like.  I had waited for what felt like an eternity to see him.  It was also scary because he was in an isolette, hooked up to all kinds of wires and had blue lights shining on him because he had developed jaundice.  He was doing really well, it just looked worse than it was.  Even knowing that though, I wasn’t prepared for seeing him like that.
Our little glow worm
I think this picture says everything I was feeling in that moment.

Over the next two days in the hospital, both Megatron and I regained some strength.  The evening of his second day, he was released from the NICU to the normal nursery, which was a huge relief for us.  He was still under the lights for his jaundice but other than that, he wasn’t hooked up to anything.  We were able to keep him in our room on our third day, which became the first day we spent together as a family.  It was looking like I would be released later that night, and we began to worry that we would have to leave him behind in the hospital.  The hospital staff continued to monitor Megatron’s jaundice, and eventually decided that he could be released as well.
We gathered our belongings (which seemed to multiply while we were in the hospital) and The Pilot got a head start out to the car while Megatron and I were loaded into a giant plastic cart.  It was part cart and part wheelchair.  We hitched a ride and a patient aid rolled us down to the front entrance where The Pilot was waiting.  On the ride from the post-partum floor down to the lobby, lots of people stared, some asked how old he was and there were a few “congrats.”  We were quite the spectacle.  And the entire time I was thinking “these strangers better not try to touch my baby!”  Ahhh yes, the paranoia begins!